[ol'cs]

How cancer, or death of a child, or profound mental illness, or any of the long list of humankinds profoundly, life altering collective maladies feel, either one at a time, or in conjunction with each other.
We are all going to pass on, that's the great leveller, but in the mean time, we have to hunt Mammoths to survive. Some of us can't hunt anymore, but can still be accepted by the rest, but conditionally.
Either we cave into eveyone's wishes, "everyone" meaning those who would attempt to control us on their terms, or we stand up, or fall down, or slither out of a wheelchair, depending how we feel at the time.
During your oddessy with PD, you will all suffer from a terrible affliction, PD, and maybe other diseases too. With PD. you never know what you are going to get, how fast it will advance, and how intense it will get, and in what specific ways will it affect YOU.
PD can ruin, or should i say "profoundly change" every aspect of the life you are presently enjoying, or should i say the life that you are presently "experiencing". My only advice to current and future victims of PD is to not let the last bastion of yourself go down, that is, don't let the "individual spirit" of YOU to be made to feel any less a person of importance than the president himself. I lost most of what i had, a home, a great job. I had a beautiful wife, and three beautiful kids; they all "pushed" me away, BECAUSE of PD.
I didn't want to be pushed away. I tried everything that i knew to get them see me for who i am/was. the same guy that they loved just a few years before PD, however i was one of the majority that just gets rejected (we all have different situations). As usual, in our still mostly male driven society, more women get hurt worse when they develop any debilitating disease, and are thrown away than most men do. However, in our society today, one is very lucky, if upon marriage, both partners vow a lifelong bond that holds true to the principles of leading a married role, one which came down to us many generations ago.
I hate to be blunt, but nowadays with all the temptation that the grass is greener and people's lives and feelings are of little value, it is accepted that if you do anything that your partner doesn't like about you they can easily just "dump" you.
What? ill? PD? i have to do more work than you now, and no more sex every night!!!! * I'm outa here!
What? ill? PD? you mean we won't have 2 million to retire on and you'll be on SSDI!!!! * There'a a lot more fish in the sea, and i can reel in whatever i want.
Now some of you rading this ae not at this recognition yet, and might not ever split because of PD, but just let me warn you, if you don't read the tea leaves here, yoiu may be headed for a life that you neverever thought you would see, and PD can do it, so watch out. It may take years. i knew that my wife rejected me the minute she heard that I was going to be checked out by a neurologist. After 13 years of a PD dX (out of 33 years total) and a loveless marriage, she is divorcing me, the reasons being so ridiculous (except for total loss of love, due to PD) as to make it quite obvious that this is yet another example of an "ill spouse dumping".
I just wanted to younger PWP to hear this one PD case. It just may save someone some heartache, if properly pondered. i don't know.
I guess one has to really love ones spouse, to care for them till death do you part. This holds an ominous overtone of what or how our society is going to take shape like in the future. cs

[pegleg]

ol'cs
I know you don't like being quoted, but through your experience(s) you have posted some sage wisdom many may miss, so I'd like to capture that statement:
PD can ruin, or should i say "profoundly change" every aspect of the life you are presently enjoying, or should i say the life that you are presently "experiencing". My only advice to current and future victims of PD is to not let the last bastion of yourself go down, that is, don't let the "individual spirit" of YOU to be made to feel any less a person of importance than the president himself. Quotoe from ol'cs

I'll remove it if you want, but you know (being the good-hearted person you are) that you want others to learn from your experience.

Do you think I have perfect support from my better half? NOT! We're still together, but boy have things changed since PD came to reside between us. You have too reach down inside yourself and find that spirit oor will to hold on, or you will be "living" but "dead."

I wish you would talk more about how you got to this point. I know at least 20 PWP in your same boat. We're here to throw you a lifeline - privately, if not publicly.

Your words have already helped someone - thanks!
Sincerely

Peg

[lurkingforacure]

Ol Cs, I am very sorry to read your post. My husband has PD and I would never dream of leaving him. He's been dx'd for 4 years and while that doesn't sound like much here on the forum, he has progressed pretty quickly. It is very hard, as we have two small children, our youngest was not even a year old when he was dx'd. So it sucks, but what helps me is remembering a few things, like:

1. however hard it is for me, it is much worse for him...a living hell, if I can be so bold as to imagine (and I'm not sure I could hold up as well as he does);

2. PD changes everything. You are right, there is not one aspect of our lives it has not changed, mostly for the worse. Everything is harder. But when I am frustrated, tired, angry, tearful that he can't coach soccer or go to all the parent/teacher/school events, whatever, mainly things for the kids, it always helps to remember that the man I married is still there, behind the PD. And like I said, he has it much worse than me,,, having PD and being a caregiver/spouse to your loved one with PD both suck, but the former is unquestionably worse. I count my blessings wherever I can find them.

When we were first dx'd my husband actually tried to get me to divorce him, telling me I was still young enough (ha!) to "go out and find a real dad and husband for the kids". It broke my heart. I would never bail on him when the going got tough. And I know he would feel the same way if the situation were reversed. It was hard to hear him ask me to do something that he would never do himself if I were the one with PD.

For those people that do bail, and there are lots, unfortunately, I wonder if they realize the message their actions send to the children? What sort of example are those people setting? And later, in their final moments, how can they ever forgive themself for breaking their promise, particularly when their spouse was down and out with PD?

I'm not saying if your husband is beating the crap out of you or the the kids you stay, or your spouse is cheating on you, that is different. But PD is not like some venereal disease which you pretty much bring on yourself: it is always an uninvited, unwelcome visitor. No one knows why it hits some folk and not others. I am so sorry your wife is unable to see through the PD to the obviously wonderful person you are.

When you are cured, be sure to send her a postcard.

[Conductor71]

Ol'Cs,

Thank you for the honest, heartfelt post. I am sorry that you now face losing a relationship to whatever it is we have (I don't even believe we all have the same thing other than similar symptoms). Some days I ask myself hasn't enough already been taken away? What else next? I try to keep in mind that many things have also been given to me as well. Things that so-called healthy people have never nor will ever have the joy to experience. I guess I try to temper the pain and sense of loss I feel with that, but it does not make me feel any better per se.

I am youngish and have had some relationship issues surrounding my diagnosis, plus I have a young child to raise. I largely hold it together for his sake, but some days...

Know that it sucks to have the wind taken out of your sails with a PD diagnosis in the first place, let alone to be with someone who does not have your back in the most trying of times. As much as it may suck and tick you off just know that in the end, ironically, your health may improve a bit. I know first hand that being in a failing or failed relationship can cause a tremendous amount of stress which in turn will make your symptoms worse. I imagine that you may actually note some improvement over time.

As for being single again...well, I know it will not be the easiest thing in the world to tell others of the PD diagnosis. However, it is an excellent litmus test. If someone can't handle it up front, then no time wasted. There are many good, kind people out there who will see you/us as a nuanced, whole, wonderful person and not as a set of symptoms or a burden.

Hang in there.

Laura

[imark3000]

Originally Posted by ol'cs

How cancer, or death of a child, or profound mental illness, or any of the long list of humankinds profoundly, life altering collective maladies feel, either one at a time, or in conjunction with each other.
We are all going to pass on, that's the great leveller, but in the mean time, we have to hunt Mammoths to survive. Some of us can't hunt anymore, but can still be accepted by the rest, but conditionally.
Either we cave into eveyone's wishes, "everyone" meaning those who would attempt to control us on their terms, or we stand up, or fall down, or slither out of a wheelchair, depending how we feel at the time.
During your oddessy with PD, you will all suffer from a terrible affliction, PD, and maybe other diseases too. With PD. you never know what you are going to get, how fast it will advance, and how intense it will get, and in what specific ways will it affect YOU.
PD can ruin, or should i say "profoundly change" every aspect of the life you are presently enjoying, or should i say the life that you are presently "experiencing". My only advice to current and future victims of PD is to not let the last bastion of yourself go down, that is, don't let the "individual spirit" of YOU to be made to feel any less a person of importance than the president himself. I lost most of what i had, a home, a great job. I had a beautiful wife, and three beautiful kids; they all "pushed" me away, BECAUSE of PD.
I didn't want to be pushed away. I tried everything that i knew to get them see me for who i am/was. the same guy that they loved just a few years before PD, however i was one of the majority that just gets rejected (we all have different situations). As usual, in our still mostly male driven society, more women get hurt worse when they develop any debilitating disease, and are thrown away than most men do. However, in our society today, one is very lucky, if upon marriage, both partners vow a lifelong bond that holds true to the principles of leading a married role, one which came down to us many generations ago.
I hate to be blunt, but nowadays with all the temptation that the grass is greener and people's lives and feelings are of little value, it is accepted that if you do anything that your partner doesn't like about you they can easily just "dump" you.
What? ill? PD? i have to do more work than you now, and no more sex every night!!!! * I'm outa here!
What? ill? PD? you mean we won't have 2 million to retire on and you'll be on SSDI!!!! * There'a a lot more fish in the sea, and i can reel in whatever i want.
Now some of you rading this ae not at this recognition yet, and might not ever split because of PD, but just let me warn you, if you don't read the tea leaves here, yoiu may be headed for a life that you neverever thought you would see, and PD can do it, so watch out. It may take years. i knew that my wife rejected me the minute she heard that I was going to be checked out by a neurologist. After 13 years of a PD dX (out of 33 years total) and a loveless marriage, she is divorcing me, the reasons being so ridiculous (except for total loss of love, due to PD) as to make it quite obvious that this is yet another example of an "ill spouse dumping".
I just wanted to younger PWP to hear this one PD case. It just may save someone some heartache, if properly pondered. i don't know.
I guess one has to really love ones spouse, to care for them till death do you part. This holds an ominous overtone of what or how our society is going to take shape like in the future. cs

Your post touches the deepest and most sensitive parts of our being ..find it too painful to read.
You clearly don't need an advise from any body as you have clearly discovered on your own the existential and cultural crisis that our society faces and your PD personal drama is repeated every day in the world of the 'healthy' lot.
In the final analysis, all of us will encounter your trauma with or without love.
Your's
Imad

[lou_lou]

People who matter are
more aware that everyone
else does, too.

those who throw away their ill husband / or wife
may have thrown away a healthy mate too

love anyway!

sincerely,
moi

[marciaj]

Even tho having PD doesn't make living life easy, there still can be a happy life lived. I don't post much but just wanted to give you a cyber hug.

[rose of his heart]

Dear ol'cs,

I just read your "I've often wondered" post for the first time. It stops me in my tracks, such as they are...

I would say that my heart goes out to you, and it does. I would say that you deserve better, and you do. I would say that things will get better, and they will, if for no other reason than the nature of life--as you well know--is change.

Yet all of those words sound so cliche and naive and patronizing and, well, just plain dumb. So let me see if I can say anything novel and respectful and, well, let's hope for the best. You decide.

You began with, "How does cancer, or the death of a child, or profound mental illness feel?" Like a blindsiding divorce, like a betrayal of Judas-Jesus proportions, like a train wreck with just one comatose survivor, like PD's relentless etching away. If we are lucky, each of these burns. It stabs, aches, haunts, terrorizes. It stalks, devours, colonizes, emaciates, darkens. It maddens; it levels. It relents; it returns, again and again. To ease our suffering, we tell ourselves that it also teaches, seasons, clarifies, softens, humbles. Sometimes this is true. But did we want those lessons? Did we want that development, that gentleness, that humility? Did we ask for it?

What we want--with every cell of our being--is for the gluttonous cancer to surrender instead of our 5'4", grammar-perfect, PhD'd sister who read to us when we were preschoolers. We want the dark men with bright eyes and sharp knives to un-stab our 23-year-old husband, leaving him unscathed. We want the father of our children to overcome his brilliant, tortured mind's not insubstantial challenges and step up as a dad.

We want what we had (or dreamed that we had), what we know, what we thought we could count on. We want the faith of a child that everything will be all right. We want to avoid pain, which is really avoiding life. We want to stay the puer aeternus, or perpetual child, as a way of delaying our awareness of our own mortality. How do we do this? We believe that it is all about us.

I can't speak about your marriage, cs, nor pretend to understand. I can barely understand my life. Yet here are the mistakes I have perfected:

(1) Thinking the loved one's seemingly or actually unacceptable behavior negates their love for you or yours for them.

(2) Confusing intention with ability.

(3) Seeing our loved one's better angels as their only angels.

(4) Underestimating the loved one's weaknesses/fragility.

(5) Needing our loved one's to conform to our expectations in order to shore up our own behavior, values, world view, sense of security, etc.

What I am clumsily getting at is, well, I'm not precisely sure. Don't take her actions personally? Yeah, that's it. I guess. Good thing I didn't come up with anything cliche, naive, condescending or dumb. Sigh.

My heart doesn't go out to you. It is WITH you.
-Rose

[toadie]

hey cs,
unfortunately, some people's intrinsic character is a lot like water, taking the path of least resistance.

it's nothing personal to them, they just fear for themselves, what they believe is their best interests.

people often fear and distrust what they do not understand.
it can be very difficult for those that have never been taught, shown or explained to that there are times to step outside yourself and see to what someone else may need, want or is in their best interest.

fear and anger are only a few letters apart, as trite as it sounds.

dunno, if it helps?
take care
tammy

[pkell]

CS
I, like the others, won't presume to speak to the particulars of your marriage, but I agree with Laura, if you are able to step away from you situation and try and look at it objectively you may find you are better off than you would have been had your wife stayed. You said in your post that you knew she was going to leave even before you were diagnosed. I expect the effort it took on your part to try and prevent what you felt was inevitible, may have cost you far more than you realize.

There are worse things than being alone, being treatedly badly is one of them. I worked in the field of divorce for many years and saw too many people try and hold on to a dead marriage by their bloody fingernails, for the children, out of fear of being alone, or fear of financial ruin. The toll it took was far worse than it would have been if they had spent that time building a new life.

I really have no qualification to give advice or even comment, but I believe if your wife had stayed she would still have been the same woman who left you (which doesn't really make her a very nice person) only on top of that she would be where she didn't want to be.

Her leaving or staying was out of your control, but what you do with the rest of your life is not. Don't let one tragic happening determine your course from here on out.

Keep your chin up.
Pam